Tamoxifen

[Spirit22]

Hi Ladies my pharmacy informed me today they are out of stock of all brands of Tamoxifen apart from one brand which I can not tolerate. Apparently Uk wholesalers out of stock due to Covid 19 . which is a little worrying for everyone. I have my 4 monthly check up end of June (although haven't heard about an appt as yet ?) CA125 booked for next week. Anyway I can not tolerate the toxicity of Tamoxifen anymore its making me feel wretched , sorry for moaning, so hoping I can go on letrozole. (apparently uk stocks not affected) In the meantime I am going to stop Tamoxifen. This is me really just talking out loud and hope I have made the right decision

Lesley xx

[Mumsie13]

You go ahead and have a good rant. We all have enough to worry about without wondering if our treatment is going to stop due to lack of supplies. I must admit I did wonder a few times how drug supplies were being affected by Covid-19. But then I thought let's not borrow trouble. Hope you do find something else that suits you. 🤗 Jackie x

[Spirit22 in reply to Mumsie13]

Thank you Jackie xx

[thomas62]

Hi Lesley,

Yes you hgave a good rant. I am also on Tamoxifen - for abt.9 months now - I certainly don't like the hot flashes it gives me frequently but seems to be doing a good job (CA125 was up at 58 but now gone down to 56) so I'm sticking with it. I also did well on Letrozole. Hope you find something more suitable. Best wishes. Gwen

[Ge0rg1na]

Hi Lesley, sorry to hear you've had such a bad experience with tamoxifen. My onc put me on it as a maintenance measure for my OC, also because it was a treatment that didn't necessitate my attending hospital during covid-19. Luckily for me I have had no bad effects so perhaps I just got lucky. My only concern is just how effective it's going to be.

Good luck finding a treatment that suits you very soon, letrozole or whatever xx

[Spirit22 in reply to Ge0rg1na]

Yes I was put on Tamoxifen for maintenance too. Thank you for your reply best wishes to you xx Lesley

[Artgreen]

I did wonder whether stocks of drugs would be affected in the U.K. by Brexit but didn’t think Covid 19 would be an issue. I think you’re doing the right thing though. Letrozole seems effective for us and I’m managing the side effects with paracetamol and a veggie diet with Metformin and berberine stopping everything being too sluggish digestion wise.

Wishing you well

Alex xx

[Spirit22 in reply to Artgreen]

Thanks Alex ! I feel better already after stopping tamoxifen. I am also trying my best to improve my gut health as I have a mid line post operative hernia and worried about getting a blockage . I am trying to improve gut health with Bourladii , Kefir, and collagen powder. I have to be careful what I take as I am on blood thinners as had post operative blood clots, so turmeric and berberine is not advisable sadly .

I talked to my oncologist in January about Metaformin and he is a great advocate of it for low grade OC for re-occurance .

Best Wishes Alex keep well Lesley xx

[Artgreen]

That’s fantastic Lesley! I take it as it’s the protocol for Jane McLelland’s How to Starve Cancer book. I also thin the blood with that protocol using low dose aspirin which my onc was happy with . I hope you continue to feel better and better!

Love

Alex x